Starting to feel like it never really happened
AnonymousOctober 25, 2006 at 1:40 am
Not sure if you know my story (my original posts disappeared while the site was down) but for those who don’t i came down with GBS (Miller Fisher variant) in July and went downhill rapidly to the point where i was totally paralysed, on a vent and in a coma within 48 hrs. There were times when they didnt know if i would make it, whether i would have brain damage etc etc. I spent 4 weeks in ICU and 7 weeks in hospital in total. I made such a rapid recovery i only required 1 week of rehab and walked out of hospital unassisted.
It is now 3 months post onset and I would say I am 95% recovered – my only real residual is fatigue and even that isnt too bad. I know I am blessed to have made such a great recovery, apart from the trachy scar you wouldnt know anything was wrong to look at me. When i first came out of hospital GBS dominated my life, it was part of who i am and i needed to process what i went through (seeing i wasnt really aware at the time) Now when i tell people what i went through it is like rolling out the same spiel every time and it feels like i am telling a story about someone else. It just doesnt feel like it really happened anymore. I’m not complaining! Just wondering if anyone else feels the same, like it is just a dream that is slowly fading from memory.
I have always been good at writing and people tell me i should write a book about what i went through. I started to write it all down but found it really hard – so many thoughts emotions etc I am worried if i dont hurry up and finish soon i will have forgotten it altogether!
AnonymousOctober 25, 2006 at 8:45 am
Absolutely, I feel the same way. I am grateful for the opportunity to put this damn thing in the past. When I first got out of the hospital, GBS did dominate my thinking. Then when I had a bout with pneumonia, I was extremely anxious about a possible recurrence. However, life does go on, and it is slowly turning into a bad dream.
At the same time, I am trying to keep a piece of the experience with me, so that I will continue to value every day I am given, every moment with my family, realize how fortunate I am, and possibly help others in similar circumstances.
Definitely a tough balancing act to remember the good things from the experience that make one stronger, yet not dwell on the pain and frustration of the experience.
AnonymousOctober 25, 2006 at 8:58 am
Ah, Swimmy, you have hit the nail on the proverbial head. It is so important to me, and I’m sure, others, that I continue to hold that feeling that I was blessed with the recovery that I have had, so that I can continue to give of myself in hopes of helping others. Not just with GBS issues but with dealing with all that life throws us. I believe that over the years I have drawn on the emotional stength that I know I have in reserve, to reach out to friends and family members, and even strangers, as I have seen the depths of heartache, despair, frustration and pain, and know what they feel like. I am so much more empathetic than I was before.
Over the years I “misplaced” the worst of the experience, but sometimes when I read something that triggers a memory on a thread it does bring it all back. But then I put it away again and simply hold on to the knowledge that I have been put here in this time, in this place, with these experiences so that I can be there for the people that need me. I am not saying that I am in any way “special” for this. It just is. And I accept it.
AnonymousOctober 25, 2006 at 9:59 am
I did do some writing while I was sick (not as bad as you – never hospitalized) and it is very interesting to go back and look at what I wrote and how bad my handwriting was (didn’t have home computer then). So yes, do some writing on this now!
In past years of therapy I learned that when you feel like it wasn’t you that something happened to, you are disassociating yourself – in otherwords, I feel in time you will reclaim the events and integrate them into yourself. It is an acceptance thing – not denial. I can only say this after years of trying to pretend nothing happened to me. I recovered 95% very quickly also, and that was so frustrating as the fatigue I had then (and still have) was with me but no one could see it. I do occassionally ask friends or family (that is left) what I was like then.
I think I am talking to myself more than to you… thanks for listening.
AnonymousOctober 25, 2006 at 8:55 pm
I do know where you are coming from. I was vented and trached for 6 weeks, hospital for aprox. 3 months and went throught so much physical therapy, and funny thing is, now matter how much I wanted to go home from the hospital, I still felt ‘safer’ there. Within 6 – 8 months of leaving the hospital I considered myself ‘recovered’. At 19, I decided to live my life to the fullest :rolleyes: and pushed the whole horrible experience to the back of my mind. My mom would sometimes tell people what happened, with me present unfortunately, and I would really get upset and walk out. I didnt want to talk about it, think about it or even hear the word GBS again. I guess it was my defense mechanism, and sometimes when deep in thought, I would almost feel like it never happend and was just a bad nightmare. This is how I felt and ‘dealt’ with my GBS for 19 years.
I’m trying very hard to ’embrace’ what I’m going through now because of GBS, sometimes with more dignity and grace than others.
AnonymousOctober 26, 2006 at 10:49 am
Like the others I know what you are feeling. I was diagnosed on March 9, 2006. GBS and Miller Fisher. Quick diagnosis and treatment helped for it not to progress too far. I feel fairly normal most of the time and it can seem like it happened to someone else. I don’t want to forget entirely because this ordeal showed my true inner strength in how I can handle a personal crisis and it made it even more real to me that we MUST value each and every day because you do not know what may happen tomorrw.
I still have residuals – double vision in my periphery vision, droopy eye lid when I get tired. FATIGUE that hits hard, even when I’ve been getting my steady 8 hours every night. ODD pains here anf there in my feet and hands – I try to think of them as healing pains.:) BUT I try to not be my symptoms – you cannot live if all you think about is aches and pains.
I completed a mini triathlon in Sept 2006. I was slow, but I had to do it because I was able to move my arms and legs. All during the Summer when I trained, I kept thinking you could be in a wheel chair, you could be in a rehab hospital, etc. I did for me and for those that could not.
Good Recovery to all!
AnonymousOctober 27, 2006 at 10:01 am
I know where you are comming from as far as not feeling good but I am still having alot of residuals including pain, fatigue, stength, balance, proprioception, etc. I am not back up to feeling as good as the day I went into the ER but I’m better than when I was in the hospital 🙂
Congrats to you though on how well you are doing, thats great!
AnonymousOctober 28, 2006 at 5:58 am
thanks for your replies everyone … i know what you mean about being a better person because of the experience, that’s part of the reason i dont want to forget what i went through. It is just strange that when i first got out of hospital GBS was in my every waking thought and now it seems like a distant memory!
My daughter has a gymnastics competition tomorrow in the town where i spent the majority of my time in hospital so i am hoping to pop in and say hi to everyone in ICU. When i left ICU i couldnt even stand. When i left the hospital I went back to ICU in a wheelchair but to walk in totally “normal” will be a big thing for me!
AnonymousOctober 28, 2006 at 6:48 am
i know what you mean montanasmum, i will be doing that also in dec. my husband will be having a surgery the 6th of dec at one of the hospitals that i go to when i have my paralysis events. he will be staying the night in the icu, i can’t wait to be able to walk into and out of that ward. it will be like starting a new chapter in life.:)
AnonymousOctober 29, 2006 at 3:08 am
well, i went back to the hospital where i received most of my treatment. My favourite doc in ICU wasnt on but the head of the region was and he remembered me. A couple of nurses i had were on and were glad to see me – one gave me my first shower and we managed to get water out in the hall so we had a laugh at that. And one of the wardies was there and he remembered me – he only had to lift me in and out of bed on the bloody hoist every day for 4 weeks! One nurse i didnt recognise came up to me and told me she was the one who intubated me. I also went up to the medical ward where i spent 10 days after leaving ICU and 2 of my favourite nurses were on – including the one who nursed me when i had to be rushed to ICU. It was a really good experience and i think they appreciated seeing me doing so well, especially the guys in ICU who saw me at my worst.
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